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Tag: recurrence

So after sending emails and messages to the local urology consultant who I was supposed to talk to on the 28th I suddenly got a phone call from a nurse on Friday morning asking if I could see him at 11:15.

Thinking the point of the meeting would be just to discuss what to do next I quickly got in touch with my husband and he managed to get away from work so he could join me.

I was a bit surprised when my name was called in the urology department and the nurse led me into a treatment room and asked me to remove my clothes, since the consultant would be doing a cystoscopy. There’d been no mention of that in the phone call.

Even better, once I was prepared the consultant shows up quite obviously without having read through my notes or made any effort to remind himself of my case. My husband and I had to go through the whole history of surgeries, some of which the consultant himself had performed.

Anyway, he started doing the cystoscopy and, as I’d expected, couldn’t get more than a centimeter or two in before reaching the new stricture. For once I could actually see the screen myself. The good news is that although the stricture is quite severe (I’d guess narrowed down to about 1 mm diameter) it looks like it’s short and the tissue is still looking quite pink and not too scarred.

The consultant then wanted to immediately start sticking in a guidewire, apparently with the intention of poking a catheter in there or something. My husband nearly leapt on him and explained why that was a bad idea, something you’d expect a urologist to know.

He responded very sullenly (his manner had been curt and dismissive the whole time) with “so what do you want me to do?”. I’d actually already told him in the emails and messages I’d sent but apparently he hadn’t read them.

In the end he agreed to request urethrography, so that we can get an accurate idea of the extent of the new stricture, and to forward the results to the surgeon who’d performed the most recent urethroplasty.

Now I just have to hope that they can schedule the urethrography quickly, that the radiologists have some idea what they’re doing and that I can get this stricture treated before it becomes much worse.

I had my uroflowmetry appointment up at the hospital this morning, the results look like this:

The graph really shouldn’t be that long, or that flat and the peak should be much higher. Qmax (the peak flow) should be somewhere over 15 ml/s, I managed 4.1 ml/s. So the stricture has recurred, or a new one has formed.

It’s felt for the last few weeks like the flow is restricted at the far end of the graft area, where it joins the original urethra. That was where they removed some scarring during the most recent surgery and patched it with a bit of skin. It seems like that patching hasn’t worked.

So now I’m back in the position of being barely able to pee and desperately trying to persuade a bunch of doctors that it might be worth doing something about the problem soon, before it gets worse. The local hospital couldn’t even manage to have me see a doctor after I got the results. Instead they’ve booked a time for him to call me, on the 28th of April!

I’ve been meaning to write an update for a while but never quite got round to it. Things have got much worse and I’ve been having a lot more hassle with the urology department.

It seems that their efforts to dilate the stricture have (maybe unsurprisingly) instead made it contract more. Over the months since my follow-up appointment it has got to the point where it’s now worse than before my urethroplasty. Peeing is agony and I’m now having problems with suddenly and urgently needing to pee, often at inconvenient times. Sex is just impossible because of the pain of ejaculation.

While this has been going on I’ve been keeping in touch with the urology department about getting an appointment for urethrotomy. At first I got a letter giving me a date to go in for a pre-operative examination but no operation date. Then they cancelled that.

It turns out that the senior urologist had decided (for reasons nobody I’ve spoken to can/will explain) that I should be referred off to the surgeon who’d come here to assist with my urethroplasty. Of course, they didn’t bother to phone or email him to get his opinion and they sent the referral off by post.

Weeks passed without anything useful happening. I emailed the surgeon I’d been referred to and he quickly replied saying that there was no need for him to be involved and that he’d referred me back to my local hospital.

I emailed the surgeon at my local hospital with this news, but apparently he couldn’t do anything about it until he received the referral back, by post. Another week passed and I emailed the local surgeon with a detailed description of my current situation. He forwarded me on to the nurse who schedules operations, asking her to find an appointment as soon as possible.

So I’ve now finally got an appointment for a urethrotomy next week. Of course, given that the stricture is now much worse I doubt that there’s much chance of long-term success. I fear there’s another urethroplasty in my future.

I finally had my follow-up appointment today. I mostly wanted to ask about the curvature, twist and pain of my erection and the continuing strange sensation in parts of my foreskin, where some patches are almost numb and others that feel like they’re sunburnt).

The first step, as usual, was uroflowmetry. I peed into the machine and returned to the waiting room. Then the nurse came back for me and took me to an examination room where she measured the remaining urine in my bladder with the ultrasound device. There were 90 ml remaining, although some of that might have been new as I’d had a lot to drink in the morning to make sure I could pee on demand.

After a while a junior doctor appeared, yet another one I’d never seen before. He told me that although the shape of the curve now looked normal the maximum flow rate was too low and they’d do a cystoscopy to check out what the problem was.

I wasn’t all that keen on the idea, knowing that cystoscopies have a relatively high chance of causing further damage. I was happier once I heard that one of the surgeons who’d performed my urethroplasty would be there.

After all the usual preparation, including two large doses of local anaesthetic gel squirted up my urethra, the endoscope went in.

The good news is that the graft is looking nicely pink and healthy. The bad news is that there’s a stricture where the graft joins the original urethra on the side towards the bladder. That has partially blocked my urethra at that point, although not enough to be very noticeable. You could just about see past the stricture to normal urethra on the other side, so it wasn’t very long at all, just a millimetre or two.

The doctors discussed with each other, with the nurse and me occasionally reminding them that I was there, and decided that I should try dilating the stricture for six months or so to see if it helps. That’s another thing I wasn’t keen on, knowing that dilation has an extremely poor success rate and can actually make things worse.

The nurse disappeared off to get a selection of different sizes of catheters to work out what size I should start with. I endured the awkward chit-chat and then silence with the senior doctor.

In the end only a number 8 catheter would pass through, after several attempts by both the nurse and the surgeon. It seems that there’s a sort of little pocket formed by the graft that kept catching the catheters and there’s no way I’d be able to get any useful size up there myself. They were hoping to start with at least a 12 and work up to a 16.

So now I’m waiting for an appointment for another urethrotomy.

This isn’t entirely surprising. Small, thin strictures of this kind are apparently common after urethroplasty. All the research I’ve seen suggests that the chance of recurrence after urethrotomy is low, I’m just kind of disappointed that the whole thing isn’t over yet.

One option I’m sort of considering is to hold off on the urethrotomy and see if the stricture gets any worse. I can live with it in its current state. I’ll have to read up on things a bit more and think about it.

And finally, the things I originally wanted to ask about (wonky erections and odd sensation) are all quite normal and related to scar tissue and regrowing nerves. I need to be patient. Also, erections are apparently good for stretching the scar tissue.

Before the infection I’d had a couple of days of enjoying peeing normally, with a really strong flow. After the infection I assumed that the flow was being restricted by my swollen prostate. Once my prostate was back to normal it was obvious that the stricture had recurred within a month of the urethrotomy.

Reading the research on urethral strictures it seems that urethrotomy is often unsuccessful with strictures of the penile urethra, especially if they’re quite long. In some places they’re recommending doing urethrography to check the size and location before performing urethrotomy and in some cases going directly to urethroplasty instead.

At my next visit to urology, three months after the urethrotomy, the doctor was determined that the standard treatment was to repeat the urethrotomy. Fortunately I’d prepared and was able to insist that all current research indicated that the first one had been pretty much doomed to failure and any successive urethrotomy had almost no chance of success (due to the location and speed of recurrence). After trying to scare me with warnings of the dangers of urethroplasty he finally gave in and agreed to refer me to a more senior urologist.